Hand to Hold's Official Blog: Written by Parents for Parents

Your Story is Valid

twins NICU hand to hold, NICU experience

Life with these two is not always easy, but it’s definitely never boring.

As a supportive network of NICU parents, we do our best not to compare experiences, but to recognize that everyone’s experience is different, and everyone’s feelings about that experience are completely valid. It seems no matter how long the NICU stay, many of us carry some degree of guilt about not being able to protect our babies.

A few years ago I wrote an essay about how I’ve never had “just” one kid. I came home from the hospital after our five week NICU stay, overwhelmed with two infants who didn’t sleep nearly as much as they did in the hospital. I wrote about how for years I harbored resentment towards those who had it easier than I did – those with just one child, those with two children more spaced out, those who were not possibly as overwhelmed as I was.

When the essay was published, parents all over the internet commented in droves to tell me what a horrible mother I was, slamming me for not being appreciative of the three beautiful children I do have, when there are women everywhere who struggle with infertility, miscarriage, and infant loss.

They weren’t completely wrong. But those stories were not my story, and each of our stories has a valid place and deserves to be told.

I do not know what it is like to lose a pregnancy. And I only know the pain of losing a baby through reading the stories from our contributors and others on the internet. I’ve wept over many YouTube videos sent my way through our Facebook page, some parents proudly documenting their preemie’s first year of life, some commemorating a life cut way too short.

These stories grab my heart and squeeze it so tight, I can’t breathe, and I wonder how those parents have the strength to keep it together.

I also read stories from mothers who are still wracked with guilt after their babies were unexpectedly taken to the NICU after a seemingly healthy, full term delivery, leaving them to recover alone in her room, and frightened and unable to see their baby right away.

These experiences are unimaginably hard. All of them.

If we do anything as parents in this community, we need to lift each other up in our times of need. A week in the NICU can be terrifying for many, while month in the NICU can be quite uneventful for others. Those first few hours and days are overwhelming and chaotic for every parent.

Each experience is unique to that parent.

Your fear and your uncertainty are not dependent on the gestational age of your baby or the length of your journey. All of these pains, worries, frustrations, heartaches and yes, celebrations, are still valid. It’s neither a contest, nor is it safe to brush off your own feelings of worry or pain because someone else has it harder. There will always be a more heartbreaking, more frightening, or more inspiring story.

But your story is still your story, and it still counts.

It took me years to get over my resentment, to realize that everyone’s version of hard is relative. Once I let go of my preconceived notions based on my own experiences, I gained empathy towards others who may not have preemies, may not have twins, but who may be dealing with their own difficulties: the mama of one who desperately wants more, the mama of one who lost a twin, even the mama who is having a really difficult day and just needs to vent a little bit.

Your hard is still hard. Your feelings are still valid. Your story still counts.

Navigating the NICU When You Have Older Children at Home

nicu siblings

Having a baby in the NICU is painful. There is a special, additional, layer of hell when you also have other children at home. My daughter, Lorelei, had just turned five when her brother was born two months early. She lost her only child status in … [Continue reading]

What Does That Mean? Reading Your Baby’s Cues

bonding-in-the-nicu

Cues are How Your Baby Communicates Cues are the signals your baby uses to show what they are feeling and how they are coping with the world around them. Babies can show this both through their behavior and through changes in their physiological … [Continue reading]

In the NICU, Blood Equals Life

My son's first blood transfusion at 6 days old

The first thing you're staring at in the picture is that scalp IV. It looks terrible, painful, and generally uncomfortable. Rest assured it is the best IV for a tiny preemie like my 24-weeker. They can't move their head very much, so it doesn't … [Continue reading]

What is RSV & When is RSV Season?

RSV, RSV season

by Tiffany Grisham Having a new baby is a time for celebration and joy, but for some new parents, worries and fears seem to only be second to diapers and feeding, especially if that new baby was born premature or with special health concerns. For … [Continue reading]